Please Stay Behind the Fence and Don't Feed The Trolls

I don't normally write about "on line" life, but I felt that in a show of solidarity to one of my friends, who fell victim to a troll on Twitter recently, I felt it was timely to write this post to help others. In this case, my friend is the sweetest, kindest person you've ever met, and took this troll at face value. A converstation then ensued that made her feel deeply uncomfortable and sad. Recently with Cybermummy11 and with the commencement of the Netmums blogging network, more people than ever are blogging, tweeting and promoting their blogs. And unfortunately, you need to know about trolls.


Now back in my day a troll was a hairy, smelly creature that hung around under bridges causing trouble. Later came the "troll dolls" in an attempt to give trolls an element of cuteness and respectability. And this, is in essence, what an internet troll is. A hairy, smelly creature, with a thin veil of respectability.  The word "troll" in an internet sense, actually comes from fishing terminology, not smelly, hairy, underbridge dwelling catergories. Casting a net widely, dragging it along, and seeing what you get in the net at the end of your session. This is what trolls do.

An individual who chronically trolls in sense 1; regularly posts specious arguments, flames or personal attacks to a newsgroup, discussion list, or in email for no other purpose than to annoy someone or disrupt a discussion. Trolls are recognizable by the fact that they have no real interest in learning about the topic at hand - they simply want to utter flame bait. Like the ugly creatures they are named after, they exhibit no redeeming characteristics, and as such, they are recognized as a lower form of life on the net, as in, "Oh, ignore him, he's just a troll."

http://www.dictionary.net/troll


The natural habitat of the troll is the internet forum. They inhabit these places and either start posts or throw themselves into a discussion, in order to cause trouble. Some trolls are just fun loving creatures who want to stir the pot. Some trolls may feel they have a legitimate point, but approach it in the wrong way. Other trolls are deliberately setting out to cause relationships to fracture and ultimately seek about destroying the internet forum completely. And some have been successful.

Now, with the explosion of social media sites and blogging, the trolls are on the move. A well moderated forum, with savvy moderators, can disarm or even destroy a troll. However, social networking sites are unmoderated, and the trolls can move in with a lot more ease and efficiency. I think ultimately trolls want to destroy your confidence, make you stop what you are doing, and make you give up. Trolls, ultimately, are bullies.

So what can you do to be troll savvy?

1. Recognise the comment for what it is. If its on Twittter examine the account. What are their other tweets like? What does the bio say? If there's no bio at all, then that's a major warning sign. How many followers do they have? If their ratio of people they are following is much higher than the number of people following them back, that's a major warning sign. If you can, just ignore the comment and move on.

2. Draft in reinforcements. Twitter completely unmoderated as is Facebook, so draft your own moderators in to help you assess threats. Get some trusted internet savvy friends to look at the tweets or comments, and pass their opinion. My go to person is my sister who is very internet savvy and has had her own, somewhat devastating experience with these creatures. The same, of course, goes for your own blog comments.

3. If on reading back you've realised you've thrown the troll a biscuit, don't then throw it a 3 course meal. Back away. Unfriend, unfollow, report if required. Don't feed the trolls. I wouldn't report trolls except in serious circumstances. Trolls have a nasty habit of shapeshifting. If they are banned or blocked, they get a new IP address, a new identitiy and keep doing it. At least if they retain their current form, i.e. username, you know where it is, if you over react and ban it, it could come back in any form.

4. Trolls are often in fluffy sheep's clothing. Sometimes trolls are needy people with a lof of baggage, and you realise a bit late. It's never too late to walk away, and walking away from a troll should not cause you guilt. It will, but it shouldn't.

5. Keep doing what your doing. Life your online life the way you want to. If someone has criticised your blog, its very hard, our blogs are our happy spaces where we want to keep safe from harm, and share our thoughts, but they are open forums, unless we are careful, and we are open to these attacks. It's up to us to "troll proof" our own conscience.

For every troll, there's 1 000 genuine readers and supporters, so be troll aware.

Don't feed the trolls.

Birth Plans - Neccessary or Not

I read on a forum the other day about a prospective mum's birth plan.

1. Go to hospital
2. Have baby

Her query was whether she'd over simplified it and should have been thinking more deeply. She'd read a few things that had worried her, and wondered if she needed to consider a more detailed plan. 

When I was pregnant I had a voracious appetite for pregnancy magazines I loved them! My favourite one was "I'm Pregnant" I think it was called, it was quite a missive, and had a huge section in the back for doing a very fancy birth plan.

I've heard of people with typed Word documents in a nice plastic folder full of instructions. I've seen pages of discussion on forums about what should be included, what can be included, what should be left out. I have an interest in medical things, I was fascinated about childbirth, and I started thinking about what mine might look like.

I doubt that my mother's "birth plan" in 1972 would have been any more detailed than the one above. Go to hospital, have baby.

When I was 22 weeks I was in Germany visiting my Mother In Law, who is a midwife for the British Forces, and we went for a long walk and chatted about my pregnancy and about childbirth. She had a feeling I wouldn't get "to the end" and told me not to bother with birth plans. Yes, read up about the options for pain relief, and about the sort of things you might need to make a decision about, but don't over plan. Be prepared to go with the flow.

I don't like this push to plan everything, and I don't know where its come from. Is it the media? By which I mean specifically the "mama media". Is it the NHS? Has it come from the States, where there are more choices and options, by virtue of a fully functioning private system? Has it come from anxious mums to be? I don't know.

I think, in a sense, that birth plans are disempowering. Sometimes there are no choices. And not just in cases like mine where I delivered a baby 3 months before I was meant to. Sometimes babies get stuck or distressed. You can't plan for that. Sometimes, your pain threshold is an unknown factor. If you've had a boring, healthy life you may not have ever been in a hospital as a patient. You may not have had anything more painful than a headache. You don't know whether you can make it on gas and air or whether you need an epidural.

Things like pethidine have had bad press and many women have put on their birth plans "no pethidine", but maybe it has a role, its quick acting, and if its too late for an epidural and gas and air has worn off, then perhaps its appropriate, I don't think we should be ruling anything out on birth plans. Midwives and obstetricians are experts, and their aim is a healthy baby and a healthy mama.

So with my mother in law I decided on the birth plan that is identical to the mama-to-be's on the forum and to my own mother.

1. Go to hospital
2. Have baby.

And the beauty is it works at 27 weeks, 37 weeks and 42 weeks.

Don't Call Me Mummy

I'm afraid this is a bit of a rant. I hate being called "Mummy". Don't get me wrong, there's nothing sweeter than my son saying "Mummy" and his favourite thing to say, especially in the morning is "oh my Mummy" it makes my heart sing. For a long time he said Mama, and it was only in Australia that it all came together. And I love it.

But anyone else, forget it. Forget it. I didn't give birth to you so don't do it. My husband tends to refer to me as "Mummy" (only in front of Joseph mind, and certainly not in the bedroom, that would be weird), but that's ok. The last thing I want is Joseph calling me "Kylie" (However I do call my dad, who is very much my biological father, Bob, but I don't know why!)

When Joseph was in hospital, doctors called me "Mummy". I hated it. In some situations, like when Joseph was in for his hernia surgery, I didn't mind, we were only in 24 hours, it was a busy ward, and learning all the parents names would be impossible in a unit devoted to day case and overnight surgical cases.

However, when your baby is in hospital for 10 weeks, and is the only baby in the ITU ward I think its common courtesy. Learn my name and use it. Calling me "Joseph's mum" or "Joseph's mummy" is acceptable, at a pinch, but not "Mummy".

I'm not a young mum, I was 36/37 when Joseph was in hospital. I was younger than some doctors but older than some of the others. One day in the cafeteria one of the doctors accidentally called me "Mummy" and I went mad! "Please don't call me that, not in here, please!!!" and he laughed it off. But I had a point. About ten people were scratching their head as to how I could be the mummy of a 50 year old man, who was a completely different racial background to me.

By the end of the stay all the nurses called me Kylie and some of the doctors. One in particular got a dressing down for calling me Mummy, he was only in his mid twenties and it made me feel uncomfortable. He also used to pop up when I was expressing milk and call me Mummy, but that's a rant for another day.

Really, its not hard to remember my name. I would have happily worn a name tag! Or a flippin t-shirt.

Because at the end of the day there's only one person who truly is able to calle me mummy, and that's my son.

Bumping into Angels in Disguise

We live in a fairly small town. Although there is more than one supermarket, the one we tend to use is frequented by a lot of people we know, especially nurses. One day we were frantically shopping, Joseph was about one, and not the world's biggest fan of shopping. We bumped into one of the nurses. "Oh my lord, he's huge!" she said. I made such a refreshing change from "how old is he? Are you sure? Isn't he tiny?"

I think a lot of my friends who have "done time" with their babies are the same, they have kept in contact with staff via facebook and/or in real life. Its such a boost to have these people comment on photos, or see you in the street and look with absolute joy on their faces at the transformation from dinky dot to ordinary baby or toddler.

One day I had to take Joseph to the hospital for an opthamology appointment, and we ran into one of the consultants that looked after Joseph. She grinned from ear to ear. "He's just massive, haven't you done a marvellous job?" And that made me feel wonderful. And, importantly, it made me feel that his progress was down to me, not them.

Because there was a time, when Joseph didn't feel like ours. From talking to othe rmothers who have been in the same position, this feeling is fairly normal. Although you are the parents, you have no authority, you are told what to do and when. You have feeding schedules, even when you can pick up your baby is very much controlled by staff. I don't think its easy to appeciate when you have had a "take home baby" just how hard it is to have someone dictate pretty much your every move with your own baby. You can't decide when to feed them, often what to feed them, you can't always do the sort of parenting that you want to do, that you've dreamt about, that you've read about.

And once you are on the "outside" it takes a long time for many people, to realise you can do what you like! I know I felt this way quite keenly. And I've heart other mothers of premature babies say exactly the same thing "Can I pick them up, do you think it's ok?" You can bath your baby when you want. If you want to go for a walk, or a weekend away, nothing is stopping you, you don't have to ask permission. It's daunting as well, when you have had 24/7 support, no matter how intrusive it becomes, having a ward full of baby experts is a comfort.

But there's another side to having your baby in hospital, a more positive one. I remember many times when the very experienced staff would show me things, how to swaddle, different positions for feeding, different ways of bathing, even things as simple as how to bottle feed and sterilisation techniques (which as confirmed breastfeeder I knew absolutely nothing about!) and I realised how priveleged we were. We had input from experts. And whilst at times it was a source of frustration, different people did things a little differently, so we could then decide which techniques we liked the best.

Whilst having a premature baby frightened me in many ways, and it was a shock, it has really given me a great deal of confidence in my parenting. I came home from hospital with my baby with a routine, and I had a set of skills that I wouldn't have had if my baby had been a "take home model".

I am so grateful to those angels, who work in NICU, and devote their time, not only to the babies in their care, but to the families who have had their world shaken to the foundations.

Day 5 - A Story of Fear and Faith - continued

No matter that we are now in day 6 then next two days have merged into one, and the story continues from yesterday

I awoke at 3am, I could hear a strange noise outside my door, where the Patientline machine was. I popped out and a man was desperately trying to pay for TV for his distressed partner. The machine was temperamental. I opened my drawers and got a heap of change. The man looked startled and apologised profusely. I explained I had my alarm set for 3 to express, so not to worry and proceeded to put the money in the machine for him and got him all sorted. I'm not sure he believed I'd had a baby, and was a little confused as to why I was on antenatal, but I couldn't be bothered explaining!


Once back in my room I paused. I went through my drawers. My wallet was there with over £50 in (I wouldn't suggest taking that much to hospital but I took my handbag with me on the Thursday not really expecting to be admitted), my iPod was there with all our wedding photos, and the camera with all those precious first pictures. The lowlife bastards had only taken the teddy bear. My perspective changed. They needed the bear. They left all my valuables. I relaxed, and expressed.

I padded down the ward in the dead of night to take my milk down. Joseph looked comfortable. I was left alone to talk to him. One of the doctors (who would become my favourite) came and spoke to me, to make sure I understood all that had gone on and to go through his latest results. He had a tiny bit of optimism. I went back to bed.

That day, Joseph annoyed everyone. He was getting better, but it was very difficult to get a long line anywhere near him, and in fact, it failed three times. The consultant, the same one from the previous day, was worried. For the meantime Joseph was receiving basic nutrition with glucose, but it was only enough to keep him alive, not for him to grow. He required TPN in a long line. My milk was being frozen, and being used for comfort.

However, Joseph was a lot better in himself. He was still a very poorly boy, but no longer critical. I felt stronger, and that my faith was being rewarded, and that I just had to keep strong.

That night I went back to the ward. One of the midwives came in with the biggest blue fluffy dog I had ever seen. They had done a bit of a run around and replaced the bear. Then was a knock at my door, one of the men whose baby was on the unit with Joseph came in with his two sons, and a little blue bear. They had heard about what had happened and replaced it with one of their own. I was deeply touched that everyone cared so much about us, and about Joseph. I did find the bear eventually, it was spotted next to a baby boy, whose parents were drug addicts. I felt pleased, in a strange way, that the bear had gone to a baby who needed it. The thieves hadn't taken any of the items in my room that they could have, quite easily, sold for drugs, they'd taken the bear.

The next day, day 7 was a strange day. I went down in the morning for rounds and the consultant was there. He looked at me and said "we have a serious problem, and I need your help". I looked at him, and smiled. "I need to get this long line in, or we will not be able to give Joseph adequate nutrition, what do you suggest?" I said to the consultant "I'll have a word".

Everyone left. I opened the incubator doors, I held Joseph's tiny hand, and I spoke. "Joseph, I know this is hard, your tired, your sick, but you have to help the doctor. You have to be still, and be calm, and don't fight him. He is trying to help you. You need to guide him, show him where this thing needs to go". And then I said a little prayer for him. And then I left.

I went to the chapel and spoke to Sue, my beloved Reverend who became and still is, a dear friend. I went and had lunch, I listened to music, I expressed. I went down to the ward about 2.30. It was quiet. Locked down. I turned to leave and beaming consultant leapt out! "Come here mummy!" and he put his arm around me. He said "I don't know what you did, but you did it, its in. We need a series of x rays, but I think its in." He had a tear.

The radiographer arrived, and set up. He took loads of x rays. He went. He came back half an hour later. He'd missed Joseph. Joseph was the size of a small kitten and was covered in a sheet, and he hadn't got the right pictures. He did it again. Again it failed. He came back a third time. He had ginger curly hair, and was lovely. I grinned and said to one of the trainee staff "he had straight hair before he met Joseph". It must have been stress, because everyone just collapsed in hysterical giggles. This set of films was successful. And, the long line was in, and TPN commenced.

On Friday, I went in as usual, and made it for rounds. The consultant grabbed me in a hug and sat me down. "What do you do?" I cocked my head to one side. "What do you mean?" He went on "You are not like other mothers. You are so positive and so happy, and you are making the difference here, your son is much much better, and in fact is the strongest 27 weeker we have ever seen. What do you do here all day?"

I explained that I read and sung, I massaged, I talked, I prayed, I showed him photos, I told him stories about our family, I mothered him. The consultant took out a prescription pad and wrote "mummy to give massage Rx as required". I grinned from ear to ear. He told me to keep believing and keep strong. And that was the last I saw of him, he went back to where he came from, and we were back under our regular consultant.

And that was the last of our medical emergencies. Joseph got "normal" complications after this - PDA which I will explain in a subsequent post, and bradycardias, and anemia, but our stay was long, but pretty boring in medical terms after this. My faith had paid off.

Day 5 – A Story of Fear and Faith

Following on from yesterday I thought it might be cathartic to write down an account of Day 5 until Day 7, that writing it down might help just get it out of my head and help me clarify it. It is sensitive, and I have bawled writing it, so if you don't want to read it I will understand.

 

When Joseph was born, I was positive. My obstetrician told me he was delivering a live baby, that the time in NICU would be hard, but that I would get my baby. Looking back, I think he took a massive risk in saying that to me, however, he did, and it kept me going in the hard times that were ahead.

Naively I thought that the birth would be the riskiest time for our baby. I heard him cry, and once I’d realised that it was my baby, I felt reassured, I felt he would be fine. I had no idea of what lay ahead. And whilst I knew it would be hard for him to grow, to feed and to be well enough to come home, I had no idea of the complications of prematurity and the things that could cause a small baby not to come home. I think now that that might have been a blessing rather than a curse.

The first few days of Joseph’s life, really, were uneventful. He was in his incubator, he looked ok, he looked like a skinned rat, but a well skinned rat. If there can be such a thing. He was active, he was bright, and I thought he was the most beautiful thing I had ever seen.

On the morning of day 5 I was still inpatient at the hospital. I went to see him early in the morning then went up for breakfast. I came down again and the mood was very subdued. The usual buzz wasn’t about. I felt a seed of dread, about to grow, in the pit of my stomach. They pushed me out and locked the room down for x-rays. This kept happening throughout the day. They did regular blood draws. There was a doctor in the room at all times. I was absolutely terrified.

But, I didn’t show it. I kept my Pollyanna head on, and I sung my songs, and massaged his foot, and did the containment holding. I kept completely calm even though inside I felt like a washing machine on a spin cycle. I wanted to throw up. Finally one of the doctors came to me and said “things have changed, Joseph’s tummy is distended, we’re not sure what is going on, but it isn’t good”. This was around 11 o’clock in the morning. I went upstairs to my room, I can’t really remember why, just to get something, or freshen up, I’m not sure. As I walked into my room it felt wrong. Drawers were half open, things weren’t where I’d left them. I just assumed I was going slightly nuts and I went back.

Another doctor came, and said the same thing as doctor 1. I don’t think he knew I’d been told. He seemed almost pleased to be able to give me bad news, like Joseph was some sort of exciting case. He didn’t speak to me like I was a mother, and that this was my precious firstborn son. I was quite cross. I didn’t say anything, just nodded, and went back to my room for lunch. I straightened it up a bit, the bed was unmade, I didn’t touch it, I just couldn’t be bothered.  I looked at lunch, it was unappealing, my husband suggested we go to the cafeteria. It was my first time outside since it all kicked off on the Thursday. It felt amazing to be in the fresh air. 

After our lunch we went back to the unit. The tone had changed again. Things had gone from subdued to downright sombre. I was terrified, but I stood by the incubator, opened the doors and resumed the norm singing 5 little ducks, and massaging Joseph’s tiny foot. There was a very snappily dressed consultant, who had been brought in from another hospital, and an entourage of staff. This could not be good. He started to talk, very fast. I asked him to stop, told him I was still ill, and I had to sit down. Someone got me a chair and I sat. I can’t remember the exact words. 

He started by saying that Joseph had a deadly infection. He told me that he thought it was NEC, and that Joseph could die. I nodded, calmly. He told me that I had no idea of the gravity of the situation and was too calm and was concerned about my mental health. My husband stood by me, completely numb. I listened as he went on to explain that there was little they could do, he was too weak for a long line, too weak for transfer, and that they were running out of options. I nodded again, still feeling calm. He said again “you should be more upset”. I looked at him and said “this is my son, I believe in him, I believe in you, now you do your job mate, and I’ll do mine. My job is to love him, to care for him and to sing to him, and that’s what I’ll do.” They then locked the ward to do more x-rays. 

My husband left, there was an important football game on and I wanted him to see it, to have a break. I went back upstairs. My bed had been made by the lovely nursery nurse. But there was something wrong. Something was missing. I went and got the nursery nurse “Have you seen the blue teddy bear” she replied “no you must have misplaced it. I searched, but it had gone. Some midwives came in “it’ll be in here somewhere”, they said. I said “no, it’s over a foot tall and huge, it’s been taken”. 

I started to sob, and sob, and sob. They had taken hope. Joseph’s first bear, bought by a visitor not a close friend, an acquaintance. But she, like me, believed in our baby. And now hope was gone. I couldn’t breathe, I couldn’t function, my baby was dying and his only toy was gone. My husband was called. He took ages. He came in with a little bear with a pink blanket. He said that was my comforter, and I could cuddle it and take it with me, so no one could take it. He held me whilst I cried. I sent him back to the pub to watch the football.

A very close friend came to see me, Teresa, with chocolate, with gifts. She and I went to see Joseph, who by now was actually looking a little better. We talked about him, it was lovely. She left. I sat by his incubator, it was now quite late, and I read to him and chatted to him and prayed for him. And then my husband came. We sat together and watched. My husband left at about 10.30 that night. I stayed with Joseph a little longer til I could stand no more. A doctor came in and told me that although he looked more comfortable, it was the morphine, inside a war was taking place.

I cried again on the way up to my room and I sat on the bed and howled and howled. A midwife came in and said “what is one thing that would make this better that I can do for you?” I cried “run me a bath”. So another midwife ran a deep, warm bath and helped me in. They found the fluffiest NHS towels they could find. I lay in the bath, patted my tummy and I said goodbye. I said goodbye to my pregnancy, goodbye to Joseph, and I cried some more.

When I got out and back to my room the midwife said I’d need to have a psychiatric assessment. She was concerned for my welfare. They had read my notes and saw my history of depression and felt I needed input. There was no one to see me, so they sent one of the obstetric registrars in to see me. She asked me lots of questions, and then told me she was taking me off my methyldopa and putting me on labetalol. I just glared, took a deep breath and said “no you are not doing that.” She looked at me, very confused. I then said “why am I on methyldopa and not labetalol Doctor?” she looked a bit uncomfortable. And I put her out of her misery. “I am a serious asthmatic and I made a well considered decision to go on methyldopa knowing that it was contraindicated for people with a history of depression, rather than cause my asthma to flare up, as at the time I was still pregnant and felt that with a background of pre eclampsia and IUGR an asthma attack could be fatal for my baby”. She smiled at me and said “clearly, you have more marbles than me, you are in an impossible situation, you are tired, you need to sleep, I’ll leave you alone”.

And with that, I went to sleep.

Recall, Memory and Small Babies

Lately I have been taking part in some research projects. There have been two main ones, first a DVD for mothers and fathers who have a baby in a Neonatal Unit (NICU), and secondly a booklet for Tommy's about premature birth.

Part of the second project involved telling our story to a professional writer. And you know, I think its the first time I have cohesively told the story from beginning to continuous end to someone in a completely impartial role. And you know what, it sort of hurt.

When Joseph was in hospital and I was so stressed, caught up in it all, and wondering if it would ever end, people would say "one day, you will forget all about this time". And I used to hate it. How could I ever forget? The fear, the loneliness, the isolation, the anger, the grief. But you know, yesterday brought it all flooding back, and yes, I had forgotten.

I was never one for keeping keepsakes. Other mums left hospital with lots of different things from their baby's journey. I left with virtually nothing. I didn't even keep one of the incredibly small nappies. Last week, when at the consultant, I asked for one, so I could keep it, and take a picture.

I really had forgotten just how small Joseph was at birth. I was asked yesterday to recount our journey through NICU. I had forgotten the fear, the reality of being sat down by a consultant and being told that my baby might not live through the night. I really had forgotten about the nitty gritty of life in the unit. I recalled how I used to catch four buses if I went twice, and six buses if I had a break for lunch in town, and eight buses if I went twice a day. I forgot about the madness of organising the redecoration of our flat whilst Joseph was critically ill. I forgot about how we hated being in the flat at night as there was a great gaping hole in our lives. Our baby was not with us.

When I support other mums and dads I always say the same thing, that that time in hospital is so surreal, you have a baby but you don't have a baby. The crib is empty, you may have bought your pram but you can't use it. I remember how weird it was to have our car seat fitted and we drove around for a couple of weeks with a car seat, but nothing to put in it. I wanted a big teddy bear or something so it didn't look so empty.

And today, both my husband and my mother have said the same thing "look at what you have now, everything is fine, you have a happy toddler". But my feelings today aren't about the present, and yes I know how lucky I am. I know and am painfully aware that not everyone takes their babies home.

But despite the PTSD and the months of feeling awful, I don't think I have grieved. I did grieve for my lost pregnancy, but I don't think I ever grieved for the loss of that normal newborn experience. I think though, the relationship I have with Joseph is different because of what we went through in those early months, and that's just fine by me, because I think he's amazing. (That's him looking at the "silly nappy" as he called it!)

Don't forget the give away for a Disco Pig